Removing Barriers – Elly’s story
Elly Moreno-Preciosa is a 6-year-old girl recently diagnosed with Severe Aplastic Anemia. Her only cure was a bone marrow transplant.
Fortunately for Elly, her 11-year-old brother was identified as a matching donor. She received her transplant on June 1, 2022.
Both of her parents are hard-working agricultural workers in Northern CA. They live 200 miles from the Lucile Packard Children’s Hospital, Stanford, which performed the transplant and is continuing treatment until Elly’s immune system is functioning properly.
The Family’s Challenges
Since Elly’s brother was identified as her donor, both parents had to stop working for several months to be individual caregivers for their children. COVID policies do not allow siblings at bedside. Her mother took care of Elly, while her father took care of their son.
Obviously, this had an impact on the family’s limited financial resources.
After the transplant, Elly’s father and brother returned home to work and attend school. But Elly and her Mom remained in the hospital due to complications.
Even after she is released, Elly will require follow-up visits for the next 6-12 months.
That’s a 400-mile round trip.
Obviously, being diagnosed with a life-threatening disease is distressing. When children are involved, worry and fear impact the entire family. The outlook is unknown.
Patient families are concerned about paying the bills while they are unable to work. In Elly’s case, they are also worried about transportation while half of the family is living 200 miles away for continued treatment.
Individually, each of these barriers can be intense. Combined, they can be extremely overwhelming.
The Icla da Silva Foundation removes barriers for patients who require a bone marrow or cord blood transplant. We provide emotional, logistical, and financial support during transplant and treatment.
Thanks to the generosity of our donors, we were able to help Elly’s family with a small grant for rent, transportation, and meals.
Elly is doing well. Her dad and brother travel 400 miles every weekend so the family can be together.
We look forward to learning when everyone is back home. We hope the best for Elly and her family.
Please consider making a donation that will remove barriers for patient families like Elly’s.
With your help, we will continue to make a difference for patients in need of a bone marrow or cord blood transplant.
Written by: Bret ItskowitchShe Passed Out in the ER
Removing Barriers – Laneater’s Story
Laneater Johnson was working from home; she didn’t feel well all morning. On her first break of the day, she had chills that made her shake uncontrollably. She realized she had a fever, so she took some Tylenol and decided it was best to go to the emergency room.
She knew something wasn’t right; maybe it was a urinary tract infection.
After the triage assessment they give you when you visit the ER, they sent her to the waiting room to wait for a doctor, but she passed out.
Laneater was rushed to undergo all kinds of tests. They didn’t know what was wrong. She was right about having an infection, her body was septic. When the results came back, she was diagnosed with AML (acute myeloid leukemia).
She was immediately transported to Medical City Dallas to undergo 45 days of intense chemotherapy treatment.
A Long Process
She went through a long process that included many inpatient visits for continued tests and chemotherapy. Those treatments went on for about a year before they determined that she needed a bone marrow transplant.
There were no matching donors for her on the national registry, so they tested her siblings and her children.
Everyone in the family was a half-match, but her youngest daughter represented the best possible match.
In June 2022, Laneater received a blood stem cell transplant from her daughter.
Laneater was not able to work since that very first visit to the emergency room. Even after finally receiving her bone marrow transplant, she still couldn’t return home.
Since she lived more than 50 miles from the transplant center, she was required to stay nearby for continued monitoring until the hematologist released her.
Fortunately, she was released soon after.
The Icla da Silva Foundation supports patients undergoing a bone marrow or cord blood transplant. Our Icla Cares program removes barriers to treatment with emotional, logistical, and financial assistance during treatment.
Thanks to the generosity of our supporters, we were able to help Laneater with a small grant to offset lodging expenses while receiving follow-up treatment at Medical City Dallas. Her stay was shorter than expected, but that didn’t stop Laneater from showing how grateful she was to receive assistance.
“This support came when I was in dire need, I didn’t know where I was going to get the rest of the money.”
It has been a long journey, but her doctors say she is doing well. Laneater looks great, and she smiles as she tells us that she can’t wait for her hair to grow back.
Watch Laneater share her story
We have high hopes for her continued recovery.
Please consider supporting the mission of the Icla da Silva Foundation. Your donation will help more patients like Laneater. Your gift will support bone marrow patients with critical needs.
Together we will continue to make a difference.
MAKE A DONATION
Written by: Bret Itskowitch
How does a Single Mother with Life-Threatening Cancer Keep it Together?
Removing Barriers – Kristina’s Story
Late last year, Kristina did not feel well. All of her energy was gone. She told us that instead of falling asleep at night, she would just pass out.
Something wasn’t right.
She had a consistent, low-grade fever. With the ever-present fear of covid that we all live with, she kept taking covid tests; but they were all negative.
Kristina is a breast cancer survivor. Having lived through that experience, she knew something was wrong.
Unhappy with the medical care that she was receiving, she made an appointment to see a new primary care physician. That doctor immediately scheduled blood work.
While driving home, Kristina received a call from her new doctor.
She was asked to pull over. Her white blood cell count was through the roof. No one understood how she had the strength to stand up, let alone drive. She insisted that she was just minutes from home.
An ambulance was urgently directed to bring her to the hospital. Fifteen minutes after arriving at the hospital, she was diagnosed with blood cancer (acute myeloid leukemia).
After months of chemotherapy, Kristina received her bone marrow transplant.
The transplant was successful, but her follow-up visits will continue for many months.
Kristina has been unable to work since her diagnosis. She is not expected to return to work until April of next year. As a single mom, she is doing the best she can to care for her two boys.
We Are Glad That She Found Us
The Icla da Silva Foundation provides emotional, logistical, and financial support to patients who require a bone marrow transplant.
Kristina lived out of state from the nearest transplant center. Thanks to the generosity of our donors, we were able to help Kristina travel back and forth to receive treatment. We also provided her family with a small grant to essentially keep the lights on during treatment.
These small grants, in addition to emotional support, helped Kristina get back on her feet.
Watch Kristina tell her story. Her heartfelt emotion is powerful as she shares how the Icla da Silva Foundation removed some of her barriers and supported her recovery.
Kristina has had a long journey, and it isn’t over yet, but we look forward to her recovery.
Please consider donating to support the mission of the Icla da Silva Foundation. Your gift will help us continue to remove barriers for patients like Kristina.
As a 501(c)(3) all donations are tax-deductible to the fullest amount allowed by tax law.
Thanks for reading.
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Written by: Bret ItskowitchRemoving Barriers – Nicole Perkins is Filled With Gratitude
Although she has suffered a blood disorder for 13 years, which resulted in cancer, Nicole is a fighter. Her heart is filled with gratitude for the assistance she has received.
Nicole Perkins was diagnosed with a blood disorder in 2009. For years, she kept regular appointments at the Dana Farber Cancer Institute to have her blood checked.
Everything Seemed to Be Fine
Until she was diagnosed with Multiple Myeloma. Nicole also developed a rare disease called Amyloidosis. Both of these conditions are the result of abnormalities in the plasma cells of bone marrow.
Nicole is a hard-working, single mother of three. She never expected to face a life-threatening diagnosis. She also never assumed that she would be unable to work.
She was immediately sent to receive chemotherapy. Her treatments continued every week for 7 months. As expected, chemotherapy takes a lot out of you.
Received Her Blood Stem Cell Transplant
Fortunately, Nicole received her blood stem cell transplant in July of this year.
Her journey is far from over, but she has faith and will continue to fight.
The Icla da Silva Foundation Helped Nicole on Her Journey
Nobody expects to receive a rare, life-threatening diagnosis that requires a bone marrow transplant. Fewer still appreciate the challenges that are associated with treatment and transplant.
Why We Help
Managing a rare disease while also maintaining a home and raising a family is a difficult task to accomplish. This is why the Icla da Silva Foundation helps bone marrow or cord blood transplant patients with emotional, logistical, and financial support during their journey.
Our goal is to remove barriers. We help patients manage unexpected challenges so they can focus on their treatment.
Watch Nicole share her story.
Please consider a donation that will support more patients and their families who are going through their journey to receive a bone marrow or cord blood transplant.
Together we will make a difference.
Written by: Bret ItskowitchFinding a Cure for Valery
Removing barriers so a little girl can receive her life-saving treatment.
Valery Hernandez is a 9-year-old girl from the Dominican Republic. She was diagnosed with acute lymphoblastic leukemia in 2019. After two years of chemotherapy at the Instituto de Oncologia in the Dominican Republic, her cancer finally went into remission.
But the leukemia was so aggressive that it returned after only five months.
While a bone marrow transplant was her only option, the hospital in DR does not perform pediatric bone marrow transplants.
The medical team there referred her to the Icla da Silva Foundation.
We helped identify a transplant center in the U.S., Nemours Children’s Health, for her bone marrow transplant. After reviewing her case, a study for CAR T-cell therapy was identified at the National Institute of Health (NIH).
A team of doctors were interested in Valery’s case for a clinical trial.
What is CAR T-Cell Therapy?
CAR T-cell therapy is a treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they attack cancer cells. T cells are taken from a patient’s blood. The gene for a special receptor, which binds to a specific protein on the patient’s cancer cells, is added to the T cells in the laboratory. This receptor is called a chimeric antigen receptor (CAR). A large number of these CAR T-cells are grown in the laboratory and given to the patient by infusion.
CAR T-cell therapies, and other antibody-based therapies, are used to target surface proteins found on leukemia cells. The goal is to improve outcomes for patients with blood cancers that do not respond to chemotherapy.
The family cried with joy after learning about the clinical trial.
CAR T-cell therapy, followed by a bone marrow transplant, was the best opportunity for long-term survival.
There were many barriers we helped remove in order to give Valery her chance at survival:
- Identify a Transplant Center in the U.S. for her bone marrow transplant
- Petition to get her accepted for the clinical trial at NIH in Bethesda, MD
- Support her application for a temporary humanitarian visa
- Arrange accommodations at NIH
- Arrange travel for the donor to transplant her blood stem cells
The first phase of the treatment, the CAR T-Cell therapy, was a success.
The Next Phase
Valery is doing great! She has been transferred to Nemours Children’s Health for her bone marrow transplant, which will happen in a few weeks.
The Foundation assisted with the arrival of her donor, Valery’s younger sister.
She is a perfect match.
We have been in constant contact with the family and continue to support them with logistical and emotional needs on their journey to a cure.
We are grateful for the amazing medical teams that are caring for Valery and her family.
Please consider making a donation and help us remove barriers for more patients like Valery.
MAKE A DONATION
Written by: Bret ItskowitchTaking On a Life-Threatening Journey with Confidence
How A Single Mother Keeps Hope Alive
Samuel is an 11-year-old boy from Astoria, in Queens, New York. He loves to read and play video games.
Since birth, Samuel has lived with a low platelet count.
Low platelets are caused by a genetic mutation. A low count is less than 150,000 platelets per microliter. Sammy’s count has usually been around 90,000.
In April 2020, Sammy was tired and suffered from a fever. His mom Alessandra was nervous. She was concerned about covid, so she brought him to the hospital. They diagnosed strep throat and prescribed antibiotics. She thought that was a good thing.
But he didn’t get better.
His pediatrician diagnosed mononucleosis and prescribed another antibiotic. It didn’t help.
Sammy’s platelet count had gone down to 25,000.
A Mothers Healthcare Journey Begins
Alessandra took Sammy to five different hospitals in New York City, Washington DC, and Boston. They were all large and well respected. She even called her personal doctor in Brazil.
They continued to discover abnormalities in his blood, but the findings were not conclusive. Bone marrow failure was suggested as the diagnosis.
Alessandra wasn’t sure what her next step should be.
She is a strong, intelligent, and confident woman. A single mother to two boys. She would not give up. She kept asking for more information, another opinion.
The doctors have recommended a bone marrow transplant.
Searching for a Donor
Alessandra’s next step is to find a matching donor for her son. Since both she and her older son have the recessive gene, they cannot donate their blood stem cells.
The doctors have searched the national registry, but there is no match for Sammy.
Because of his Brazilian heritage, the chances of finding a matching donor are low. There are simply fewer registered donors who would potentially match Samuel.
The Icla da Silva Foundation
Alessandra remembered the Icla da Silva Foundation as an organization that helps to remove barriers for patients who need a bone marrow or cord blood transplant. She learned about the foundation many years ago when a representative spoke at her church in Queens.
Alessandra contacted Airam at the Foundation. He listened to her story, understood her challenges, and answered her questions. He recommended some strategies to add potential donors and introduced her to the team at Be the Match.
We helped remove the initial barriers that every patient goes through, by providing information about the process, and orientation towards a life-saving solution. The goal is to explain the challenges while reinvigorating hope.
Their search for a matching donor began over the July 4th weekend.
Alessandra is very hopeful, “tell me what you need me to do. Should I post on social media, meet with the local press, talk to community leaders?”
We answered her with, “yes, yes, and definitely yes.”
Our mission is to remove barriers to treatment for patients who require a life-saving bone marrow transplant. We are helping Alessandra and her son with their search for a potential donor.
We are spreading the word and hoping a match will be found soon. A volunteer group is being formed through the Icla da Silva Foundation to expand support for Alessandra and Sammy in their search for a donor.
How is Samuel?
Last week, Sammy’s platelet count was 14,000. He is tired, and he has difficulty going up a flight of stairs. He bruises easily. Alessandra tells us, “it’s obvious when his platelets get low, he gets petechiae.” These are red marks on his body, which means he is bleeding into his skin.
Alessandra remains strong, “we will get through this, we will find a solution.”
To JOIN THE REGISTRY you need to be between the ages of 18-40, in good health, and willing to donate to any patient in need. Click the link below or text: Swab4Sammy to: 61474 and request a swab kit be mailed to your home.
If you have already joined the registry and want to help firther, please click the Volunteer button below and register to join our Zoom call.
JOIN the registry
Together we will save more lives.
Written by: Bret ItskowitchIcla Cares Helped Darphelia Receive Her Treatment and Transplant
The Icla da Silva Foundation removed another barrier and one more life was saved. The short story below details how we recently helped a patient in need.
Everyone recognizes that gas is expensive, especially now. The cost is particularly high in California.
But what if you didn’t have a choice?
I understand we can’t affect the price of gas, but what if your life depended on a 30-mile car ride to the nearest cancer center? What if you had to take this trip three times per week to receive your life-saving treatment?
This was Darphelia’s barrier.
Due to Multiple Myeloma, a life-threatening disease, Darphelia wasn’t allowed to take public transport or carpool with others.
She certainly couldn’t skip a day and just stay home.
Her illness, and her doctors, had pulled her out of work a while ago. And she had already gone through her retirement savings.
Darphelia told us that this was the first time in her life with no income.
What was she to do?
Icla Cares worked closely with the social worker from UC San Diego Health to get Darphelia the support she needed. We removed her barrier so she could receive repeated, high-dose chemotherapy treatments and then an autologous blood stem cell transplant.
The transplant was successful.
Darphelia is eating again, “eating clean” as she says. She has gained back some energy and is happy just to be able to walk around the block.
“Thank you! I can’t say how much I appreciate the help that I received. It’s difficult to judge a situation without having gone through it yourself.” – Darphelia Lowe, Multiple Myeloma Survivor
Thanks to our friends and supporters, we removed one more barrier and another patient received their transplant.
If you haven’t already, please consider making a donation to help us remove barriers to treatment for patients in need.
Your gift matters more than you know.
Thanks for reading.
Written by: Bret ItskowitchAnother Barrier Removed When No One Else Could Help
The Icla da Silva Foundation goes the ‘extra mile’ to ensure that another life is saved.
Young Herzel was inspired to become a nurse after surviving thyroid cancer in 2017. The remarkable care that she received as a patient impacted her greatly, and she enrolled in nursing school with a desire to help others.
But while preparing for her exam to become a Certified Dialysis Nurse, Herzel was diagnosed with Acute Myeloid Leukemia (AML).
A bone marrow transplant was her only chance for a cure, and there were no matching donors for her on the registry.
Finding a Donor
The bone marrow transplant team at New York-Presbyterian / Weill Cornell Medical Center acted fast to test her brother Reggie back in the Philippines as a potential donor.
Luckily, he was a 100% match.
However, this fantastic news still presented a barrier.
Herzel is a smart, hard-working young woman. Although she was unable to maintain her employment during so many visits and treatments at the hospital, she kept her living expenses low and paid her bills on time.
But the expense to bring her brother to the U.S., so he could transplant his stem cells, was unaffordable at the moment. Her savings had already been depleted.
She didn’t know what to do. Her doctors wanted to schedule the transplant as soon as possible.
No organization was able to fund international travel for her donor.
A social worker at New York-Presbyterian contacted the Icla da Silva Foundation. After gathering and organizing the necessary paperwork, and thanks to the generous supporters of the Foundation, not only did we provide the funds, we made the flight reservations.
Within days, this life-threatening financial barrier was removed and Herzl’s brother arrived in New York for the donation. The transplant was successful and Reggie saved his sister’s life. They spent a few days together before he returned home to the Philippines.
The gift of life that Herzel received only strengthened her desire to help others.
She passed her nursing exams and recently began working for the NYC Department of Health. Herzel is thankful for the support that she received and has applied to Volunteer for the Icla da Silva Foundation.
We asked Herzel what she would say to the donors who made her brother’s trip possible.
“I want to thank everyone for giving me this opportunity to live a healthy life again. I couldn’t be any more grateful for the Icla da Silva Foundation. I want to help the Foundation as much as I can so other patients like me can have the same opportunity for life.”
You can help us support more patients like Herzel. Your donation will remove barriers for patients needing a bone marrow or cord blood transplant.
Your donation will save lives.
Written by: Bret ItskowitchWhen She Said, “This Patient Was Relying on Me!” We Knew Exactly What She Meant
This February, Mayra Lopez received a strange text message. It read, “You might be a match, it’s important that you call us.”
Mayra had almost forgotten that she joined the Be the Match registry three years ago, back in February of 2019.
She included herself as a potential donor after being recruited by her sister Karla, a former employee of the Icla da Silva Foundation.
When asked why she joined, Mayra told us that her sister explained how rare it was to find a donor within the Hispanic community.
“Life is so fragile, and I will do whatever I can for my community.”
When Mayra called back after receiving the text, the only information she was given about the patient was that he was a 22-year-old male, and probably of Hispanic descent.
After hearing that, she knew he didn’t have a choice, and neither did she.
“This patient was relying on me!”
She couldn’t just ignore this patient…Mayra said yes to donating her blood stem cells.
We asked her about the donation process. She said she was surprised at how easy it was. “It was so much easier than I expected. No pain, nothing. It took about 4 hours and I napped most of the time.”
In the hours between having breakfast and lunch at the hospital, Mayra saved the life of someone she did not know by donating her blood stem cells.
When we asked what she thought about that, Mayra insisted, “it was a once in a lifetime opportunity”. She told us, “I was excited because something good was happening. A life was saved…it’s a beautiful thing.”
We thanked Mayra for saving a life and explained how the Icla da Silva Foundation had recently expanded our mission to provide emotional, logistical, and financial support to remove barriers to treatment.
We told Mayra, “Just like you, so many patients are relying on us”. She let us know that she understood, and she was excited by our cause. “Resources are limited, and so many people are afraid to put themselves out there. Thanks for everything you do.”
Thank you, Mayra. Thanks for your support, and thank you for saving someone’s life.
Together we can make a difference for patients in need of a bone marrow or cord blood transplant. Together we will save more lives.
Written by: Bret ItskowitchOne-Year-Old Boy Receives His Life-Saving Transplant
We were able to remove several barriers during his journey to a cure.
John was diagnosed with leukemia as a 2-month-old baby.
Obviously, his parents were concerned. They needed help understanding all the information about options and challenges. They weren’t sure what to expect or how to navigate the process.
They wanted the details in plain language.
The Icla da Silva Foundation helped John’s family overcome their first barrier.
With so much time traveling to receive treatments, and with so many tests and appointments scheduled, it was impossible for them to keep a regular work schedule. The family had a hard time making ends meet.
This was their second barrier.
Thanks to our generous supporters, we were able to provide funding to assist John’s family with housing needs.
By removing this barrier, his family was able to focus on treatment.
We are happy to report that John recently received a cord blood transplant. His body has accepted the new cells.
We wish this little boy a happy, healthy life; a life that every child deserves.
Our supporters played an important role to ensure that another life was saved.
If you haven’t donated recently, please consider making a gift to help more patient families like John and his parents.
Together, we will continue to make a difference.
Written by: Bret Itskowitch